A Stressful Time Back at Home After Round 1

This entry is part 7 of 10 in the series "Liam's Battle" --
A bucket full of Liam's medications

A bucket full of Liam’s medications

The day my son was released from the hospital after his first round of chemo (a 5 day round that with complications led to 22 days in hospital), I came home to find my wife frantically working on Excel with the hustle and bustle of a full house exploding around her. There was a lot going on, but it was clear that what she was doing was important. The kids, who had not seen her in a long time, were siphoned off into another room every time they would show up to hang out with her.

Medicine Delivery Schedule

The Medicine Matrix

What was she doing that was so pressing? She was making a matrix of all of the medications that needed to be administered to Liam.

I found this odd. How many medications had been sent home with him?  Quite a few. When it was broken down on how many doses he is getting a day there are thirty-one.  Thirty-one different things to keep track of. Twenty-nine syringe cleanings. Thirty-one administrations by mouth with differing volume amounts.

As I watched Jenn frantically come to terms with the reality of this situation, i.e. that there were no nurses to administer and keep track of all of the medications that Liam needs, I had the stark revelation that many parents out there must not be able to keep all of this straight.  All that the discharge paperwork said was which medications he was on, the doses per day, and when the last dose was given.

This seems like a poor system.  We have figured it out, but perhaps there is a better way than, “Here you go. Good luck!”

Our experience at Children’s Medical Center has been very positive.  The medical professionals (doctors, nurses, technicians, social worker, child life specialist, music therapists, physical therapists, kitchen staff, janitorial staff, volunteers, etc., etc.) have all been wonderful.  They all created a very safe bubble for Jenn and Liam; however, I think that the transition from the hospital to home has been a little more like the bubble popping than staying in the bubble and floating home on the breeze.

It is good for the two of them to be back home. It has been a wonderful time for me to regain some of the sanity that I had lost, and I enjoy interacting with Liam all of the chances I can get.  When he is home, I get more time with him.

The bubble with all of its iridescent protection returns next Wednesday 21Sept2014 when chemo round 2 starts.

Diagnosis

This entry is part 1 of 10 in the series "Liam's Battle" --

On Sunday 17 Aug 2014, Liam was diagnosed with Neuroblastoma.  This was after a month of fussiness that could not be explained.

Six weeks prior to this diagnoses, we had a normal, almost 2 year old.  When he started being fussy, we figured that he was sick, but nothing that a kid his age might be expected to get. He was fussy in the middle of the night, and this really caught us off-guard. He has always been such an easy going kid — He was sleeping through the night at 12 weeks. So what was going on?

We started noticing that their were bulges in his testicular sack. Hernia!  He must be  fussy because of an inguinal hernia. Knowing how painful that can be from my own personal experience, we got him to his PCP as soon as possible. She agreed that we should see a surgeon.  I immediately scheduled a consultation at Children’s Medical Center in Dallas, and we were seen in short order. Once seen, the doctor agreed, and we had him in for surgery the very next day.

Once inside to repair the hernia, the surgeon found no real evidence of an inguinal hernia. We were told that what we must have been seeing were large veins in the testicular sac. We accepted this, but really did not question from that point that the fussiness could be something else.

The three days following the operation, Liam was doing pretty well. He had had a local anesthetic which helped numb any pain from the surgery.  We thought we had whatever this was beat… Then the fussiness started again. After about a day of this, we called a nurse. A likely culprit: constipation.  So, we loaded the kid up with miralax for several days until the Poo ran clear. Still fussy.  A couple more days later, I called a nurse again. The thought  at that time was that that maybe he wasn’t eating, and that was causing his bowels to not be working correctly. Give more Tylenol and Motrin — ease his comfort from the surgery so that he can eat.

He seemed better while well stocked on the pain meds, but I kept thinking to myself, “This seems like a lot of pain medicine for just a hernia operation”

Around his birthday, he developed a black eye. Those bigger siblings of his must have been playing rough with him. So of course, a scolding was in order on the etiquette of being gentle with their baby brother.

As the next week rolled by. More bruising developed on his legs, and his color was turning pale. He looked normal to me, but he was turning paler by the day so slightly I wasn’t noticing.

The fussiness continued throughout the day and throughout the night.

It wasn’t until Liam had a chance to spend the night with relatives while Jenn and I went away for an evening to celebrate our anniversary that the grandparents had the chance to notice that something was off and the bruising didn’t seem right to them.  When they returned him to us, they voiced their concerns. I watched Liam as we fed the kids pizza that night. He ate a couple of bites and his belly became super distended. It was already looking pretty large. “Maybe there is something going on that is unrelated to the surgery,”  I thought.  Right then and there I decided that I would take him to the ER. Jenn had been working with him at this point and had dosed him again with pain meds. He fell asleep pretty soon after.

“Well, if he wakes up in the night I will take him then,” I thought. I want him to get his rest.

Sure enough at about 3:55AM, he stirred us awake. I loaded him up in the car and drove to Children’s Medical Center in downtown Dallas.  I had been thinking all night that he must have a blockage in his bowel. It was time for an X-ray. Let’s shine some light through this problem.

There was no one in line at the ER at Children’s at about 4:45 when I got there.  I was seen pretty fast. Imaging was occurring faster than at any other time I have ever been to the ER.

About an hour and a half later a doctor came in my room and announced that they had found a mass above the kidney.

In that moment, I felt relieved. There had been a reason that my calm and peaceful boy had been so fussy.

In the next moment, the name of the cancer that it was most likely to be (because of how it was presenting) was announced to me: neuroblastoma. I had never heard of it. Which is probably why I did not freak out like they were expecting me to.

So after they left the room, I googled it. This is what I found: Less than 50% survival rate when in the high risk category.

I called Jenn, “They found a mass on his right adrenal gland atop his kidney.  You need to get up here.”